Mastodawn

Dear Fedi friends.

As some of you may know, I have a wonderful daughter Lila who had a severe form of epilepsy at the age of 5 months. This epilepsy is called West Syndrome.

We had to go through a hell of a treatment to stop her seizures. The thing that helped her was called "Synacthene Retard". It's basically ACTH, a synthetic hormone similar to adrenocorticotropic hormone produced by our anterior pituitary gland.

My daughter was one of the last kids who had a chance to get the Synacthene Retard from the lab that produced it (Alpha Sigma). This was late March 2024. And in May 2024 Alpha Sigma said they discontinued this product without ANY public explanation.

I am trying to inquire about the disappearance of Synacthene Retard from French pharmacies. I am looking for contacts of a medical journalist or an expert in pharmaceutics to help me lead this investigation. It may save lives of dozens of other kids with that suffer from West Syndrome. Thank you!

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Sebastian Crane 🏳️‍⚧️Nov 30

@Xeniax Boosted - good luck in your search. Is Lila okay now or does she still need the medication? The Wikipedia article suggests that most children 'grow out' of the condition; I hope your daughter is similarly better now.

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xeniax ⏚

@seabass thanks Sebastian. Lila is stable since April 2, 2024. She had no seizures since the treatment with Synacthene. Wikipedia explains that kids can outgrow West syndrome which is true, but unfortunately if seizures persist, the development outcomes are catastrophic (e.g. child not reaching any milestones, not seating, not walking, no speech etc). This statement about "outgrowing" is a bit misleading for people who are not familiar with West Syndrome. Also, if spasms are not stopped early on, they transform into other kinds of seizures. Most often in "Lennox-Gastaut" syndrome.